Sunday 13th June 2021

Reflections On Mother’s Day 2021. 56.1/2021.

Reflections On Mother’s Day 2021. 56.1/2021.

 

Content Warning: Should any post about Mother’s Day be a concern for you, please don’t read…I am sorry for your situation whatever it is.

 

After a long period of reflection (years) I chose to write about Mother’s Day to be published on Mother’s Day, 2021.

My mother told me Mother’s Day flowers were chrysanthemums and were always white. She recalls her mother being given a white flower at church on Mother’s Day. I remember these things. But cannot find any pics of chrysanthemums.

Here it IS Mother’s Day 2021.

I cannot help but do a trip down memory lane to try to understand my mother and my mothering…OK. Not all of it, because much cannot be put into words.

Reflections.

  • I grew up in a 1950s-60s  household where Mother’s Day was remembered….by my father whose domineering and controlling manner meant I have had his words about this occasion rattling around my head since I could remember. Maybe 6 till my recent old(er) age.
  • It was a day where of course we gave Mum a card, probably some flowers and may be a gift. But I never thought of the occasion without ‘obligation’. This is who I am. Long memory.
  • Mum was a kind, sharing and shy woman whose care of her husband and us two kids was exemplary. She loved that she could care for us that way. In fact, it carried on to the ways in which our kids and my brother’s would remember “Noreen” for, and her three great-grandchildren who knew her before her death in 2007.
  • Dad….where will I start? Here at the point of the conversation I had with him only 3 weeks ago when I spoke of the courage his mother had coming to Australia to marry her fiance. His comments? “She was alway cranky and complaining and wanted to know, when we arrived to visit, when we were returning” OK. I understand but as I said, Gran having been widowed with 4 kids probably had a lot of grief.
  • So why did I begin to resent the forced nature of Mother’s Day? Probably for that reason. It did not come from my heart and then, as I had kids (strange but true) I believe I began to feel the old family history repeating itself.
  • Sigh.
  • I became entangled in the “event” that should be happening as I am a mother. Oh how embarrassed I am now about that. I did not demand anything (not my Dad) but I felt sad and disappointed if I was forgotten on Mother’s Day.
  • Cringe.

What Has Changed?

  • My mature thinking, a big dose of cancer and an obligation-free mindset
  • I honour MY adult kids as they make me so proud to be their Mum.
  • I actually asked my kids, a few years back,  to allow for my imperfections (there are many) as their Mum as I was, at the time, doing the best I knew.
  • I expect nothing back. At long last. Not anything. Thanks Dad…by the way, I have told him this but his memory is…dim.
  • I know that I am loved but I do not need to see evidence or whatever based on the ‘have to’ mindset we see far too often.

Two Posts: 1971 and 1979.

These two posts are about my mothering years, in particular giving birth to our daughter, and then after a long gap where we thought that we could not have any more children, we had our son.

My Mother’s Day 2021.

  • It’s a Sunday.
  • We will be cleaning the house on our fortnightly roster.
  • I will go out for my Sunday coffee.
  • I will reflect on my gratitude for a change of mind and heart and send my love to our kids and their kids…and Dad.
  • Forgiveness is powerful as is My Loving Kindness practice.

Take care of yourselves and each other.

Denyse.

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Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

Telling My Story. Chapter 24. June 2018 – 2019. Part 2/2. 56/2021.

The backstory first:

FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Four. Telling the story in two parts. Today is Part 2.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, a recent photo…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

Tah Dah! This Chapter’s 2nd Part IS the last….for now…and into 2021 of Telling My Story. Only took 4 years!! 

The overriding memory I have of this period in my life is change. Change for the good. Change in my outlook as I moved further away from cancer surgeries and recoveries towards L I F E as I wanted to have lived it in retirement but far too many things were in the way. The series year of 2015 and 2015 tell more.

So, as best as I can, this rounding up of Part 2, thus ending my publication is going to have more photos and memories along with, fewer words.

Are you ready to come along?

Early April 2019.

As my confidence shot up and I was prepared  drive to places and see things I wanted to see and experience, Newcastle Writers Festival headed the list. A conversation (longish on twitter) with author Trent Dalton ended up with me LOVING Boy Swallows Universe and he would be there on the Sunday I was. However, I had booked to hear my long time friend & author Rick Morton speak on his first book One Hundred Years of Dirt and have a catch up if I could. I met my blogging friend Lisa for early/late lunch and we went to Rick’s session. I had also booked to see Jane Caro speak on her ground  breaking book Accidental Feminists which I had devoured. I hadn’t see Jane in real life but we were well known to each other from social media.

What a day!

The upshot.

This.

But wait there was more…I was stoked for this resurgence of my social life. Admittedly I was very tired and it was a challenge to find something to eat because of my mouth…but I was out there again. Yay. I also needed more than ever to calm and find peace within and I turned always to my art desk to find or create a new project.

Late April, Mother’s Day and into  May.

During the April school holidays, which coincided with Easter and one granddaughter’s birthday, so we entertained with great delight..always love seeing our family.

My daughter and I met at Berkelouw’s for Mother’s Day brunch morning tea and we rarely get ‘two of is catch ups. So that was awesome. My 2 year anniversary of head and neck cancer diagnosis was coming and my husband and I celebrated at one of our favourite places for morning tea. Then he said “time for your apple watch isn’t it?” YES. Please. Thank you. I had just joined a moving/walking challenge with the Department of Education so that was going to motivate me too.

About An Idea: Women of Courage.

Having read Jane’s book (listened via Audible too) and then seeing her interviewed about the findings and that women, are/were in general and in life, doing so much unsaid, unpaid work that it was women who suffered more in latter years because of separation/divorce settlements all favouring men. Her concern which is serious and major, and verified over time is that women, in Australia, over 55 are becoming the highest number and fastest growing cohort of the homeless.

Now, whilst I would like to have fixed all the issues Jane raised, and of course I could not, I did have this idea. It seemed to me that we women might feel empowered somewhat if there was a way to share some of our stories…as I saw them, of courage. That was it.

Women of Courage.

I knew many of there people, but would they be prepared to share something about themselves along this line. I set no targets, I asked politely, and received no for an answer with respect. I kept a list of those I approached on line with my proposal and by the time my launch time arrived I was ready with a great set of responses.

The first post, was mine, via introduction, and then it was time for Sam to share her story,

Ready steady….Women of Courage

In the weeks, then months that followed I pressed publish on  24 personally named posts and  one anonymous post in 2019.

I decided to stop sharing before December as I knew there would be fewer readers and then was ready to kick off again with Jane’s post

and onto 25 from named sources and 4 anonymous ones until it closed as series in September 2020.

This year, I am re-launching soon. 2021 series. From mid May…I like that time of year! Here is where all of the Women of Courage posts are.

June, July, August…..2019.

  • I can remember we had visitors for school holidays, my husband was unwell for some weeks with the flu even though the diagnosis took a while, I continued with my trips back and forth to Sydney to see the Prosthodontist less regularly but still needing reassurance and care…

 

  • I drove to Sydney in June and stayed overnight to see Vivid Light Festival from the harbour and to go to an event to celebrate the great work of the late Professor Chris O’Brien at the cancer care centre named for him. It was on this occasion I realised how hard it is for a post-surgery me to find food to eat unless I bring my own. I still grapple with this today.

 

  • I also made a quick trip to near where we used to live after a Westmead appointment and had an impromptu catch up with my daughter and granddaughter and a ride on the new-t0-me light rail.

 

  • I did quite a bit of cooking – as usual – because I need to cook for my needs. I also joined in the Soup for Soul Fundraising for then Beyond Five with my local Central Coast Head and Neck Cancer group with batches of small cupcakes. We did not know of course, that Covid, the following year would shut down all such gatherings, even restricting visitors to hospital to one for a patient or even no-one could accompany an adult.
  • I met with my local federal M.P. Emma McBride to get her support for World Head and Neck Cancer Day on 27 July. That is the date for it world-wide. I also shared more each week leading up to the date via my blog and social media in my role as an Ambassador.

Braver and braver and being prepared to say YES first rather than no continued to increase my ability to not only do hard things but to see them as small accomplishments building upon each other which is at the heart of exposure therapy.

Some Highlights: June to November 2019.

  1. Staying solo overnight in Sydney: to attend Vivid and then a conference the next day just as a supporter
  2. Driving to Hunter Valley Gardens to view what I had read much about
  3. Deciding that I really wanted to celebrate being 70 later in the year
  4. Getting great cancer checks with all GOOD news and not being as fearful of cancer’s return
  5. Becoming more interested in sharing what I could with the wider community: resources I made to The Big Hug Box and to Arterie at Lifehouse but also stopping when it became a little more of an overload
  6. Planning that I would like to invite blogging and social media friends to a morning tea to for me…turning 70 and being vulnerable enough to send invitations…Everyone actually said YES but on the day for a range of reasons sadly 3 could not come.
  7. Dealing with disappointment in a less personal way.
  8. Learning that living with I.B.S. and some incontinence might be a package* that came with ageing…and making allowances for myself with that. *In May – August 2020 I found a solution via surgery I was too scared to ponder in 2019 and I am well.

On Turning 70. 

Before my 70th Birthday, I drove to my granddaughter’s school (and daughter’s school)  to attend their Open Day. Loved celebrating gratitude for my life here:

  • Rather than dreading another zero birthday I celebrated with gratitude.
  • I visited my father a few days after my birthday to have cake and coffee with him and my brother
  • My actual birthday was the Saturday when our family came for lunch. Our daughter and her adult offspring, one with partner and her youngster and our son with his four.
  • My husband and I did the catering and our daughter made a cake.
  • It truly was a celebration of LIFE and to have this with those who loved me (vice versa) made it so special
  • A few days before I met with my social media/blogging friends too.
  • I received, unexpectedly, cards, flowers and kind gifts.

Loved this big surprise.

Lovely portraits of our 8 grandkids

 

Christmas 2019 Was Different.

After the loveliness of my birthday I was well-satisfied but getting more brave in my continued intentions to push myself further. This was when I agreed that we (husband and I) would drive to Sydney on Christmas Day – something I had always vowed would be too stressful) and enjoy a family lunch. Our son said to drop in on the way down as he would have his kids on Christmas morning. All good.

Unfortunately to his disappointment most of all, my husband had over-exerted himself the day before finishing off some outdoor work and was exhausted and completely unwell so I made the trip solo.

I remained determined to do this though on behalf of us both and to see the family. I even managed to  eat some Christmas lunch. Yay for being careful but also being adventurous.

Onward into 2020 with Gratitude.

I accepted this would be word for 2020.

I had already done a 30 days of gratitude challenge leading to my 70th Birthday.

I knew finding something to be grateful for each day was a good thing to do for my health.

Of course I did not know ahead of this just how much challenge 2020 would bring!

 

I actually blogged 2020 in 3 parts last year  for Telling My Story because I wanted to remember it well.

Here is the link to each post.

Part One 2020

Part Two 2020

Part Three 2020

Thank you for following my story. See how my avatar has changed in that time.

 

This is the ‘last one’ for quite some time.

The weekend before this post went live, I finally had all the printed copies of each post put in order, in two folders. They are evidence of My Life…as told via Telling My Story 1949 —-> and even if no-one else other than The Author reads them, I am so glad to have persisted!
They are located in the bookshelf along with other life records: my career in education, my cancer story and updates and family tree info.

Warm wishes,

Denyse.

Joining with Natalie here for Weekend Coffee Share.

 

 

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Taking Stock #2.18/51 #LifeThisWeek. 55/2021.

Taking Stock #2.18/51 #LifeThisWeek. 55/2021.

I wrote about the changes I have made to how I will blog when it’s time for Taking Stock. You are, of course, welcome to use my new version of the prompts or ones initially devised by Pip Lincolne. This optional prompt occurs every 9 week.

 

This time round, I am going to respond to these prompts relating to my head and neck cancer, diagnosis, surgeries, treatments and continued wellness. It will be marking the 4th anniversary of diagnosis on 17 May 2017. May will always remind me of this!

Admiring:  the skills of all those who helped to do my upper mouth reconstruction

Becoming:  such an advocate for spreading the awareness of head and neck cancer because it IS rare but it is also growing in numbers of people diagnosed in Australia and around the world

Curious:  about how I ‘got’ this cancer …at times

Delighted:  to be well in my recovery at almost 4 years down the track

Excited:  that my world is opening back up again for me personally as I take steps towards getting out there to share the awareness news

Feeling:  proud that I have come so far in my emotional health recovery that was at an all time low before my diagnosis in May 2017

Going: out each day as part of my health recovery

Helping: other head and neck cancer patients, families and carers where it may be appropriate

Imploring: everyone to “get your dentist to do a mouth check at your regular 6 months check” please

Joking: not. About the importance of knowing how to check your mouth yourself too

Keeping: up with my 2x daily practice of water pik use and caring for my upper prosthesis

Loving: that I have my smile

Making: changes which are working better for me as I adapt how I eat, e.g. using smaller utensils and remembering my mouth is a smaller space inside

Next: no longer waiting for what is ‘next’ in my treatment, seems all good at present

Observing: that I am a changed person inside thanks to this life-altering event in 2017…

Pleasing: …to note that the change is for the better

Reading: fiction, well, listening to it as I could not concentrate much on anything in recent years

Staying: well

Trying: to be more mindful and in the moment as much as I can….

Understanding:…that is not always possible but forgiving myself when I retreat to old habits

Viewing: my progress in terms of head and neck cancer with awe….still!

Welcoming: the ways I am learning to s l o w myself down to take notice of what I see, feel, hear and smell

X- You Choose! Xtra kind support from my blog followers and social media friends makes my recovery and wellness easier because I do not feel alone

Yes: to letting go of my past thoughts about appearance and….

Z – You Choose! …speaking kindly to and about myself. Always. Almost Always

And some more…

Gratitude to these people including me!

And finally:

Thank you for being part of Life This Week today.

Next week, I WILL be here but the words will not be mine.

The clue is at the bottom of the Link Up instructions.

Denyse.

Link Up #238

 

Life This Week. Link Up #238

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next Week’s Optional Prompt: Knowing. 10 May 2021. Guest Poster: My Husband!

You are invited to the Inlinkz link party!

Click here to enter


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Water Is All Around Us Here. #SundayStills. 54/2021.

Water Is All Around Us Here. #SundayStills. 54/2021.

About Sunday Stills:

Terri here has now  moved into her new abode and her friend from Always Write  was caring for Sunday Stills while she did so. I will share this post soon too.

May is here and if you too want to follow the prompts here they are for May 2021.

May 2    Water
May  9 Weather
May 16  Monthly Colour Challenge: Grey
May 23  Favourite Vacation Spot
May 30  NO CHALLENGE

For our planned move from the landlocked space of North Western Sydney back in 2014 we both knew we wanted more space around us, nature and W A T E R.

My husband and I both had childhood and teen years by the waters of towns and cities of N.S.W. but we could not afford to buy anywhere near those areas when we returned to the city after teaching in the country.

We always holidayed annually near the beach, and it was to this area we have retired. Still not purchased a house but we are renting where we feel like we belong for now.

Water IS All Around Us.

The Wyong River.

We live on land which  belongs to the local Darkinjung people who are the original inhabitants of this land. European settlers also farmed this land and it was only a short while ago (less than 10 years) that where we live was a place for dairy cows. The Wyong River’s source is in the hills we see in the distance from near where we live and it meanders in gentle times, and floods in times of big rains. I visit the river at different locations. One is at Tacoma as it readies itself to join Tuggerah Lakes, which then flows to the sea. Another is what I call Porter’s Creek which is where I often go to contemplate and appreciate nature and just up from there is the place, of the original Wyong Milk Factory,  where the fresh water from the river meets the brackish water of the lakes.

Tuggerah Lakes. A Huge Inland Water System.

I see the lakes at various places near us: Toukley, Gorokan, Budgewoi, Tuggerawong, Wyongah, North Entrance and The Entrance.

And undoubtedly my favourite. The Pacific Ocean.

Also known by Tasman Sea – our nearest neighbour to the east is New Zealand. Each beach along the East Coast of Australia has unique qualities and often different coloured texture and types of sand. I sometimes walk on Lakes Beach, and down to Soldier’s Beach. These are places I see the surf and the waves. I also visit the rock platforms close to shore. So much water. So much to enjoy. And I do!

What is the water like where you live?

Denyse.

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Note To Denyse Before Head & Neck Cancer From Denyse Now. 53/2021.

Note To Denyse Before Head & Neck Cancer From Denyse Now. 53/2021.
Dear Denyse of 4 years ago,
It sure was a worrying time. I know you had to be very courageous & have the teeth & upper bridge removed 3 weeks ago.
.
You sure needed to know WHAT lurked under there to cause that pain & overgrowth.
.
But still you don’t know and this is your face trying best self-care you knew then.
.
Being kind but also very worried… what WAS the issue because it sure was still growing & this new temporary denture was very uncomfortable….
.
It will still be another couple of weeks before you show your former GP what it looks like under that denture & you will be shocked that she threw her hands to her face in reaction to what she saw.
.
You know then, it IS serious & thank goodness your dentist is finally back from holidays & he sees the gums – the smelly, flappy, sore gums & says:
.
The oral surgeon needs to biopsy this & you get that done: despite your intense anxiety & IBS because you are also getting CT of face & OPG done then too….
.
And then the results are initially OK but you ARE puzzled on how on earth your gums can heal/improve.
.
And on Wed 17 May 2017 at 9.25 a.m. your oral surgeon rings to say further testing shows it’s Squamous Cell Carcinoma….and you cry but with a sense of knowing what IT is.
.
And four years from this photo, you will know as I tell you, you are WELL & you can overcome more than you EVER thought possible.
❤️from 4 years on Denyse.
May be an image of 1 person and text that says "This is.... ON THIS DAY 28 Apr 2017 Anxiety, fear what if..."
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Nature Is Pretty In Bright Pink. 52.1/2021.

Nature Is Pretty In Bright Pink. 52.1/2021.

Now I am back! Again. Loving BRIGHT as a Squares Challenge!

Becky encouraged me to do this too, after I saw the challenge elsewhere  and it didn’t have to be every day…so here I am.

https://beckybofwinchester.com/2021/04/01/bright-square/

Being Square is Fun!

Join in this lovely challenge and post a photographic square daily for one month every quarter. The theme changes every quarter and is announced on this blog a few weeks, occasionally days, in advance of the challenge month. The challenge months are January, April, July and October.

I am going to admit something here. I love using my Iphone ProMax and its camera gives me soooo many great shots, that I have started finding nurseries to visit just to photograph flowers. Oh, and I did buy a few of these pretty in bright pinks for adding to a place outside to brighten our mornings.

I also stopped the car in a street with many beautiful camellias this week as I was visiting my Dad.

So, Bright is it. Pretty in BRIGHT Pink.

Thank you Becky for this challenge which I found got me right in. I will be back in July to see what you have in store. Oh, and I also learned how easy it was to add my name and copyright.

Cheers from Australia.

Denyse.

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Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

Telling My Story. Chapter 24. June 2018-2019. Pt 1/2. 52/2021.

The backstory first:

FOUR years ago now ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at Chapter Twenty Four. Telling the story in two parts. Today is Part 1.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members. All of the stories to date found here.

And with this chapter, a recent photo…taken overlooking the harbour at Dobroyd near where I grew up close to Manly N.S.W.

THIS post is the second last in the series. Part Two is in a week’s time. Thank you to all who have been reading and commenting on my recent posts about my life since head and neck cancer. I appreciate each and every one of you and your kindness. It helps me understand my need for connection and blogging does that for me. Warmest wishes to you all. Denyse.

 

June into July 2018.

About my mouth.

This is the month after what I hoped would be the final reconstructive surgery…(still is)….and it was winter, busy and I spent even more time, alone (happily) in my red car, driving BACK and FORTH to Westmead Oral Sciences…because…. T E E T H!

Obviously healing has to take place, and the work of this next stent, the one to push my top lip out more needed lots of T I M E.

You know, that thing you have to be P A T I E N T about when you are one!

During the visits to the prosthodontist, which could vary in time ‘in the chair’ from 2 to 4 hours, I listened to audio books at the boring times of having 2 lots of hands in my mouth…and used to ‘fiddle with’ my bracelets, or even a small crystal. I was not ever nervous but my boredom could lead to anxiety and so it was best I used strategies of distraction and relaxation. I was always very tired after my day spent at Westmead and soon learned to give myself a day off afterwards.

Nevertheless, I knew that my prosthodontist was working at all he could to get my new upper prosthesis prepared for when my mouth was.

Daily Routine Helped.

As I had started with photo taking in late 2017 for a daily outfit shot, and then going somewhere for coffee, this became a given as part of my routine to see me dress well, and engage with the wider world outside home. I still do this, no longer with daily photos but it is embedded in my self-care strategies.

Life went on.

In between times, I did not sit around.

Actually I do not doing sitting around very well.

I still had my daily routine of an outfit photo and usually went out for coffee. I went to view nature and I became increasingly interested in helping with spreading the word of head and neck cancer. I also found The Big Hug Box and offered to make bookmarks and loved using my art for good. I ventured an idea to the local library – can’t recall which month but it was with a view to me running a mindful mandala making course.

I even put a ‘how to’ on the blog. Teacher me was re-emerging.

School Holidays. Visitors. 

It was a treat to see our grandchildren when their parents could arrange a visit and on one occasion we had a late birthday celebration. I made sure I had some art and craft for the four of them to do and we spent a very pleasant day in the winter sunshine.

I continued to be out and taking photos and it was good for me to re-visit places where I held special memories of seeking solace and comfort.

 

Head and Neck Cancer: Sharing The News.

As I was someone who had no idea of this rare cancer when diagnosed, I wanted to make others aware, but I also know my Professor Jonathan Clark and others had begun Beyond Five to do just that. Finally, as July approached and with it, World Head and Neck Cancer Day on 27 July I swung into action. Beyond Five sent me some ribbons and brochures and I made contact with my local federal M.P. Emma McBride and she visited us at home to find out more. Emma remains interested in sharing. I also approached our doctors and dentist with a view to sharing my “wellness” and asking them to display information. It seemed like I wanted to give back.

I did.

Thank You: No Words Are Enough.

 In the year since I had been diagnosed, after my dentist has removed the bridge in April 2017, and I had the biopsy done by the oral surgeon in May 2017, I really wanted to share with them how I was. So, I did. In two personal visits. I have done this once more to the Oral Surgeon’s since and of course I see my Dentist each 6 months.

World Head and Neck Cancer Day and Meeting The Central Coast HNC Support Group.

My M.P. had written an article about me and head and neck cancer and it was within days of that, I was contacted by Lisa Shailer, from Central Coast Cancer Centre, who looks after newly diagnosed head and neck cancer patients. She invited me to the first Soup for the Soul event at Gosford hospital’s Cancer Centre and that was where my involvement with the local group commenced. It was also the first time I had met anyone else with a head and neck cancer.

August 2018. How LONG?

On 6th August, as my patience was really, really wearing thin …to get this upper prosthesis, I celebrated our daughter’s birthday with a S M I L E.…and the race for this to be ready and in my mouth began. I was so over it. I thought this would be such a change for me when it happened, I even made up a list of what crunchy foods I would try again. (Dear reader…it was not how she thought it would be)

After more trips up and down the M1, I sensed that 21 August was to be THE day and dressed up  a little bit more. It was. The day. It felt weird and good.

I smiled for a LOOOOONNNNNGGGG time.

First time I smiled….

 

After an adjustment from my prosthodontist.

September into October 2018.

I Could Not Stop SMILING.

Even though I had “teeth” screwed into my upper jaw in August, there were still quite a lot of adjustments to be made to the prosthesis by my prosthodontist at Westmead so that meant more trips to him. He was also making a bottom partial denture of a molar on each side, to clip onto my remaining 8 natural teeth to have better biting and chewing.

I sent a photo of me to my head and neck surgeon and he was amazed at the outcome too. So cool. I had my check up and he was so happy for me as were the other people who were part of my surgeries and healing times. I met with Nadia, CEO of Beyond Five as a potential Ambassador, and on the same day said hello and thank you to Gail O’Brien, wife of the late Professor Chris O’Brien, for her husband’s vision for his one-stop Cancer Care Centre, Lifehouse.

What it was not.

No way does it replicate my own teeth. However, I took some time to get used to that as well as speaking because my mouth was now more full of ‘hardware’. Eating was tricky – and still can be – as different foods required more chewing than expected and others were just too sharp or crusty for me to be able to manage. I also found (and find) I need something slippery to help the food go down.

BUT I had my SMILE back. And that was so good.

I was invited to share my story  at the Central Coast Head and Neck Cancer Support Group and used my long lost power point and Uni tutor skills to do so. It was well-received.

I visited family with greater confidence. Trips to Sydney were ones where I once only had emotional capacity to deal with the treatments but now I was getting more brave and doing hard things.

I met people for a long awaited catch up. I saw Dad more. I visited places where I had grown up. It was GOOD to be out and about and not all about head and neck cancer. I went to a Look Good Feel Good self care workshop but was a little disappointed that its relevance to me was little. Understandably my cancer it rare, but the 90% effort on the day was placed with those with hair loss from chemo and in general were for breast cancer survivors. I appreciate that my cancer is not visible either.

November into December 2018.

Invited to become an Ambassador for then Beyond Five, now Head and Neck Cancer Australia. This was a huge honour and so good to know I could be helpful using my education background and my personal experience of being a head and neck cancer patient. I met with the CEO, Nadia and Inaugural Ambassador Julie McCrossin at Chris O’Brien Lifehouse.

Back to schools!

I was invited to my granddaughter’s grandparents’ day and I went. I would not have envisaged doing this in the previous few years but handling my head and neck cancer recovery encourage me to use my new skills of confidence and greater resilience. It was great. I loved being back in a school. Then I visited my daughter at her school. Very proud to see the library she started from Day One of that new school.

Because of a blunder made in 2003 on my Service Medal, by the NSW Dept of Education at my retirement (when I had to due to work place issues and no chance for medical retirement) I tweeted about it once and my principal friend John Goh noticed and he retweeted it and the NSW Dept of Education Deputy Secretary saw it, and emailed me “we can fix this Denyse”….and the story of that is told here. So good to have my career recognised properly for me.

We hosted Christmas.

We had not had our family gather with us for Christmas for quite some years. Then for 2018 our daughter and her kids suggested coming to our place as they were mid house move. Again, bravely, I said YES and we were delighted to do so. I also had another Santa photo taken and when asked what did I want for Christmas I said “I already have it, I am cancer free and well.”

What Would 2019 Bring?

January 2019.

Birthdays!

Always birthdays first…my Dad…95

Then our son 40

And our grandson 18.

I didn’t see Dad on the day but had photos sent. Our son and his four kids came for a lunch and we made sure there was cake and candles. Our daughter had an 18th Birthday family lunch for her boy at her new place and we were delighted to attend.

We had not driven down the way – north western Sydney – since we last lived there and the changes are extreme. Former paddocks and dairy farms are cheek by jowl housing and that is the way these days I guess. Also is a reason traffic wise, why my husband was glad to be out of Sydney.

February 2019.

Busy month to begin with the first meeting in 2019 for Central Coast Head and Neck Cancer Support Group where M.P. Liesl Tesch, former Paralympian addressed us, sharing her story.

I continued to have check ups at Westmead for my mouth. In January of 2019 the upper prosthesis was removed – it is attached by 5 abutments (tiny screws) that are in my reconstructed jaw, for minor adjustments. As you may imagine, it is a challenge for something to fit well (and perfectly) so it meant trips to Westmead for this. As time went on though, my physical care of the prosthesis with waterpik and micro brushes – getting debris away from the abutments and gums, it has not needed removal since then. In fact, I can barely believe how well I have been able to maintain this because it’s something quite new.

I also found out, that the pain I often have in various parts of my mouth inside is all part of the body getting used to what is in there. After all, it’s got my leg bits inside. My team and being published as a story on Beyond Five.

My husband turned 70. He is the original no fuss man. However, we had hoped for a small family lunch. His body has different plans and we could not go ahead as he was unwell. Nevertheless he received family love and best wishes and we caught up with family later.

A wee tribute to him…..HE got me through so many of those really hard days early in my diagnosis. His counselling skills were very much needed along with the loving and caring man he is. The night before my surgery on 6 July 2017, it was him sorting out where he would stay rather than the awful (for us) place where we had been recommended that helped calm me as I was concerned about his welfare while I was ‘unaware’ in I.C.U. Then when he visited me from home on the Central Coast, his very presence on the balcony of my room was so reassuring….love him, lots.

March into April 2019. 

Re-reading this post as I go, I am aware that it sounds like I was on the go, doing, doing and recovering and doing even more. In some ways I was. It felt SO good to be getting better after almost 2 years. It was though one of those situations with me where I.B.S. would return when I was feeling particularly stressed. And that its pattern would be more likely after any stress event. Even the good ones. I had to learn to pace myself better.

I had to learn to add in time outside.

In nature.

Taking walks.

Being a fun photographer…and then also using my creative senses to enjoy art of some kind to fill my visual and kinaesthetic senses.

Remembering my late Mum’s death anniversary here.

Learning where to STOP..is here. Next time, will be Part Two: April – December 2019.

Reality of my reconstructed mouth….

And in the next part of Chapter 24, “this” concept changes into a plan for a blog series.

Thank you so much if you made it this far.

I appreciate that!

Denyse.

Joining with Natalie here for Weekend Coffee Share.

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My Head & Neck Cancer Patient Update. Been A While! 51.1/2021.

My Head & Neck Cancer Patient Update. Been A While! 51.1/2021.

I am coming up to four years since my head and neck cancer diagnosis on 17.5.2017.

I wrote a great deal over the years about my head and neck cancer to both help myself process it all, over the many times I faced challenges including surgeries and long recovery times and I wrote for others. This is why my blog has a head and neck page to be found here.

Then in late November I wrote this.…and was very pleased to put my head and neck cancer posts away. Even though, I have included parts of this in various posts such as Life This Week and Telling My Story since, today is the first time I am writing an update.

What Happened When I Was Issued With My Upper Prosthesis.

  • I smiled A LOT.
  • I had an expectation to be able to eat foods I had missed.
  • I was told, I now know was a feeble attempt at a joke, by one of the prosthodontists, that I had to bite into an apple before I could leave the day I got those teeth.
  • I am so annoyed  disappointed, even over two years later, that I was misled with some kind of joke because life WITH an upper prosthesis is nothing like having my own teeth or even an upper denture.
  • I have no feeling in my upper lip as it too had cancer and was partially reconstructed.
  • I could eat some foods I had missed initially: missing crunchy foods….but I have to guide whatever I am eating towards my mouth and use my tongue to sense what is coming, and then the food is put in my mouth by me
  • I still have challenges.
  • I still, after all this time, cannot always guess the right amounts of a food and suffer with mouth spillage at the sides.
  • I often put too much on a fork or spoon…because I am hungry…because the food is warm…because that is life time habit

These are lessons I am continuing to learn each day…and it’s my third year of living with the reconstruction in my mouth.

My inner mouth – gums at the front and behind the upper prosthesis are skin that was harvested from my thigh. My palate is the same. My wonderfully kind and knowledgable prosthodontist (not the ‘joker’) tells me skin from the leg was never meant to be in our mouths so it will always be a challenge in terms of my management to keep it healthy as I can and for me to put up with the level of daily discomfort.

What Life Is Like For Me Now As a Recovered and Well Head & Neck Cancer Patient.

  • There is no sign of cancer within me. My head and neck surgeon does not need to see me until September 2021 – a full year since last visit
  • I am seeing my prosthodontist in mid May to have a 6 month check and CT scan for bone changes.
  • I am self-caring well for the upkeep of cleanliness inside my mouth using a water pik daily, a micro brush around the abutments I can reach and cleaning my upper prosthesis, partial denture and remaining 8 teeth with care.
  • There has been no addition gum overgrowth and for that I am incredibly grateful.
  • I keep smiling.
  • I love to share my story.
  • I continue to be an Ambassador for Head and Neck Cancer Australia
  • I will reduce my local head and neck cancer group attendance
  • I will help raise funds in the Soup for the Soul event locally where I have sourced some great help from a cafe.
  • I will share the stories of others along with my updates on social media.

BUT…here is some more:

  • I continue to learn that I have to live with restrictions.
  • I can no longer eat anywhere other than home unless it’s a manageable ‘cake’ and ‘coffee’ somewhere.
  • It makes travelling overnight anywhere a bit challenging. Mostly I can take my own foods and utensils.
  • I cannot go to someone’s place for a meal and I think…even though I do not make any fuss of it…most people really do not even think to perhaps ask what may be suitable. To offend no-one, I have to say, it’s a morning tea or afternoon tea or very light lunch that I can probably eat.
  • I feel, even though I look normal, that to understand what is happening for me inside my mouth it is better that I admit to what are my limits and stick to them as I do not want to offend….
  • It is messy when I eat.
  • I often have food spill from the sides of my mouth (particularly if I have put a bit much in) and I constantly wipe the sides of my mouth needing paper towels and tissues nearby.
  • I always have water close to me.
  • I often eat alone…not because I want to but because I take so long and I can no longer really eat and talk…my husband has kindly told me, of the ‘look’ of food at the front of my mouth.

Why Update Now?

  • I was sore eating yesterday. Stinging sore inside my mouth.
  • I know I have to expect a certain level of this.
  • My mouth is much smaller inside than I remember …because of the hardware that’s been placed inside.
  • I knew I had to change somethings about my eating habits to help.
  • I did this initially by using a large teaspoon for cereal instead of a dessert spoon. It was better.
  • I have now cut up foods into small pieces and resist putting larger (as I was) amounts inside.

I am admitting my self-care and knowledge of how to help myself needed to be written and spoken about. For too long, I have looked and sounded right…and that is good…but for many of us (and now I include me) we are never the same post- head and neck cancer.

I am forever grateful for my professional team who have ensured my wellness to this day!

I used to think I couldn’t admit to having some issues because I have had such an awesome and great recovery. I now know that in being human…and a vulnerable one at that, I had to ‘out myself’.

This is why I posted today.

Update: got some largeish teaspoons. And, have cut up food into smaller pieces. Winning at changing habits!

Take care everyone,

Denyse.

 

 

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